An ASD mind

How does an ASD mind work?

How can we enter their world to help them?

I don’t think we ever know, the reason for questioning it I guess is a small matter to me but massive to my son time and time again.   He was out with his football today and while playing with it his football has been popped, the devastation and upset this has caused and in the pasted is awful, as much as I can say don’t worry about it we can get you a new one, the hurt for him is awful we have had tears for a football.   He now doesn’t want to do anything and is downright miserable.

I guess when it’s their obsession and something breaks as part of that or goes missing they have to go through their own grieving stage. The broken football is now apart of a football display on top of his wardrobe and we await the arrival of the new football with the hope it will cheer him up.  With one football missing that isn’t to say he doesn’t have other footballs old ones which are still good to use but have been replaced with a newer model they are all in the cupboard awaiting to be used.   I guess the upset is over the fact that the popped ball is his newest one.

Anything with football that becomes old or broken tends to become part of his collection, unless he feels ready to let it go to another child, such as shirts, shorts and boots, but some remain apart of an ever growing collection.

I guess it is tough for us to understand their world, we can try as much as we like and we can help as much as we can but we never truly know what it is like for them to be them to live in a world they don’t understand, all we can do is love them and support them the best way we can.  In this case lots of hugs, listening and a place for the old football and a new one on the way.

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Winning the battle

Well with the start of a new school year in September, my daughter with her chronic pain and fatigue has gone from a reduce time table in year 9 to a full time table without PE and registration in year 10 and she is smashing it.  It’s been a hard battle for her, the fatigue and pain has taken it’s toll on her in the last few weeks and with have had to have one day off school, but she had work emailed to her and instead of resting she did the work sent to her at her own pace and did all the homework.  She went back in the next day and been in so far (touch wood it carries on)  This year tho seems to be different for her whether it is because it is the start of GCSEs and she is determined not to miss anything and let her grades drop or it’s the fact other than core it is all subjects she has chosen and that she enjoys.  I am incline to believe that it is both.  She is now showing signs of getting used to the timetable again and we can only hope that with more time she will become more used to it and won’t be fatigued by it or in pain any more than normal.

To top smashing it being back at school, she has just been entered for her next piano grade, so far she has done a grade a term, me being silly thought it would take much longer to go through grades and that her condition would slow her down more. But again she is doing so well and not just passing them but with Merits.  I look forward to her sitting her next grade but know the hard work that will go into to with practicing at home, along with homework and school it could be a rocky term this one and next.  Lets see the difference from now till December.

The difference from last September to now is incredible and I am sure she will carry on making amazing progress with a few hiccups along the way but one thing she now has the strength to battle through something she didn’t have at the start of this very long journey.  Lets see what happens at our next appointment in Oxford next week.

 

But for now all is looking OK

 

 

Keeping on top of things

So after the nightmare of last year and communication with school not being at its best, things are slowly improving!  But it has taken a lot of chasing on my part which I can understand with SENCO’s having lots of children under the belt they can’t always remember to inform you of something with your child like you asked and sometimes they just need a gentle remember by you emailing them.  I always thought by doing this I was being a pain in the bum, constantly chasing them and felt like I was nagging.  But after a conversation with school last week I found that they don’t mind these little reminders and it’s easier to reply to and email on the spot than it is to remember to send one.

 

Lets see how things carried on this term.

When it all becomes too much.

I guess we can all have our good days and bad days with in life, but a mum of special needs can be tougher than most, the constant choosing which battles you fight and which you admit defeat, whether that be with health care, school or even your child.

The fear for the future from lack of understanding in certain conditions within the wider community, workforce, health care and the list goes on to the transition you have from child services to the adult services for your child.

There are lots of amazing support groups out there, whether is be a coffee morning to a Facebook group where you go rant and share small or big achievements have others understand these without judgement.  What would it be like to live in a world without judgment for disabilities, race, religion and the endless list, I am sure it would be a much better place.

Sometimes we can lose faith in everything thinking we have no where to turn and no one to support us, after attending a meeting with others yesterday and healthcare it seems that one department doesn’t really know how to work with the other and one project is going on in one area to make things better and another one in another area, if only they would listen to us and work together to make it smoother for children who struggle and their parents.

We can only hope with the awful Ofsted Inspection in our area that the local council listen to the report and parents in making the right sort of change, but maybe this goes higher than local and it needs to go nationally.  Some amazing parent groups are doing that but can their voices be heard on such a large stage were changes is felt is not needed?

So a big to all special needs parents, in fact to all parents, you do an amazing job all day and every day x

Finally!

So after emailing the governors of the school, who did email me back to say they would chase school and I will get a reply directly, you guess it weeks on and still no reply.  I emailed the head of their academy trust, her PA got back to me to say they would look into things and arrange a meeting a day later a meeting is set with the head of the trust and the school!  So in 3 days we have had a meeting arranged but still nothing from the school in question. But not the head of the school isn’t facing us, why would he do that when we can’t even reply to a letter, so we have the pleasure of the deputy head!  I am ready to fight but having a feeling school will turn things on us and say we are over reacting to everything.  still no surface so that is now 8 weeks on so a whole term in there!

 

Feeling happy about a meeting finally but still feel we have a long way to go with them and things won’t ever change!

 

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School Report Time

When school aren’t responding to your letters and your son’s school report gets sent home and even tho you are so proud of him and his amazing report, you feel the need to reply to school with your comments on it!

Well I am in the middle of typing such a letter, just doing this blog for a break from it and help the emotions calm down for a clearer calmer letter, none of the teachers seem to understand Asperger’s syndrome or ADHD and even motor dyspraxia.   So a letter of gentle reminding is needed, I am sure this will be another unanswered letter, another thing for them to ignore and another failing on their behalf and who’s the one left suffering Oliver.

Oh well I guess I should get back to it.

 

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Return to school.

It’s always tough going back to school after the holidays, but even more difficult for a child with chronic pain and fatigue.  My daughter got up this morning and all ready for school but after a week off and being able to relax you would have thought she would be going in fresh and refreshed ready for the new term, instead she has gone in looking exhausted and like she has never been off.   We haven’t done much this half term either so to give her that time out she needs but still doing enough that we don’t lose what we have worked up to so far, a day at the coast, cinema and some homework and dog walking.

With this being the last term of school I am hopping the pressure might come off a little bit, no big end of year tests like last term and no projects, but we shall wait and see and if they do come along then we shall just face them head on like we have being doing since October.  Even tho Rachel loves the projects, she puts so much into them and they I am afraid to say take so much out of her, but then she wouldn’t have it any other way and she certainly wouldn’t put less effort into them.

Only time will tell this term on how things go for both children, lets hope it’s a good one.

 

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